Peer support and support groups

Some of the young people interviewed told us that they definitely would not want to join a support group because they thought it would be depressing, or because they preferred to spend time with friends of their own age. A woman with endometriosis told us that she 'doesn't do support groups' though recognised that they might be useful for some people. A young man with ME/CFS said that he had mixed feelings about support groups - they might be a good way to find out how other people manage their health issues but if people spent their time complaining, it could be too negative. His father attended a group because he was hoping to hear of a 'miracle cure'.

Lynn lives with her long term partner and is expecting their second child. University graduate.
Ethnic background/nationality' White British.

Do you have any other sources of support, for example support groups.

I'm terrible, I'm not very good at, I've had I've been a member of the endometriosis society for a long time and I've had numbers and people, they've phoned me up before and stuff like that, but I don't do support groups. Maybe I should, but I don't because, I think, if I was honest and true, I think it would make it an awful lot more real than, I don't, I suppose it already is very real but by talking to, talking about it with people who are experiencing it as well, makes me feel like, makes me feel vulnerable, not vulnerable, makes me feel'ill. So I don't, but the, one of the two main supports over the last fourteen years, one was a consultant at the hospital, a trainee who had a huge affect on me coping. She unfortunately, she did her training and actually left and her leaving had a huge affect on me. And the other vital support, other than obviously my family, is my GP who, even though I'm far away from now, I can still phone up whenever I need to. I think that's huge. But I shun quite a lot of support that I probably could have. My GP's put support groups numbers and flyers and things in my hand but I read it and I don't do anything 'cos they make it too real I think, I think that's why, I don't know, I don't know.

view profile

Profile Info

Age at interview:

24

Sex:

Female

Age at diagnosis:

17

Background:

Lara is a full time student nurse and lives in shared accommodation with three other young people. She has just recently moved out of the family home. Ethnic background/nationality' White.

Yes. It sort of, I, I knew about diabetes like before. So before I even did nursing or anything I sort of knew what it was. So, but epilepsy, I think there is quite a lot of stigma attached to it as being sort of a bit of a spastic sort of thing and, you know, quite debilitating and, you know, you have these weird seizures. And just understanding, understanding it. And it's quite unnerving, like with diabetes, it's something that's controlled by drugs, and whereas epilepsy, it's a bit more, you feel a bit more out of control of it in a way. Because it could happen any time, any place, anywhere. And that's quite, that's quite scary. And I think just meeting other people who've lived with it and coped with sort of having that fear in the back of their mind. Because I don't think it ever goes. Like you never sort of think, 'Oh, I'm, you know, it's always going to be fine. I'm never going to run the risk of it happening again'. Because there is always a risk. But just being able to talk to people who've lived with it and, and who do have it and still lead a normal life, I think that's quite important. Because you do think that you're not going to be able to do that. And I do think counselling is, is something that would be really sort of quite effective for people. And being offered that like sort of straight away, not being offered it like, 'Oh, here's a leaflet about counselling. If you want to go and have some, there's the number'. Like that, when you've, you're not going to take that help because, you know, you don't think you need it. But actually you do.

And I think it's quite important to recognise that however much you don't want to accept it, it's really important to accept it. And the sooner you can accept it the better, and the better off you will be in the long run. And, yes, I don't know, it's, it's really hard, because young people are really hard to get, get hold of. And particularly by adults. You don't want to talk to adults really, because they're adults and they don't understand and they don't know what it's like to be young and, you know, 'You, you were never a teenager. You know, you don't know what it's like for me'. And so I think, I think having other young people to talk to is more important than anything, because you will relate to them more. And, you know, being able to talk to someone who is also like struggling with the fact that, you know, they want to go out and go clubbing and stuff and they're scared about having a fit on the dance floor for example. Because that was really, that was one of my biggest fears. Because I love dancing and I loved going out clubbing and I really did think that it was going to sort of stop me from being able to do that. And you sort of go and you do it, but you still have the fear whilst you're there. And like it's quite difficult to just sort of totally let loose and go wild type thing. But.

Those who had joined support groups said that they had been reassured to find out that they were not alone and that through hearing other people's ideas they were able to think about what might work for themselves. Groups could also be a place to not only learn about how to live with the condition but also to meet other people in the same boat.

Mica lives with her mother, a brother and a sister. Mica is at college studying for her A2 levels. She does Drama and Dance and in the future plans to go to university to study childcare.
Ethnic background/nationality' Black British

Do you take part in any support group for young people with sickle cell?

Yeah we have a sickle cell group in [town] and there'll. There's about 'on a normal weekend there's about fifteen of us and but when it comes to parties and everything and there's about 45 or else 45/50. There are 45 of us so yeah it's usually around the meetings. We have meetings every two months or something, every two months and we get together. The adults have their one and, and the youth we have our one and we watch videos and talk about sickle cell and just talk about how long they haven't had an attack for and play games. Yeah watch movies, playing Play Station and just have fun basically being together in unity.

Ok what do you talk when because you said, we talk about sickle cell but what in particular do you talk about?

Just talk about, you know, mostly that where, where's the pains where we most get it. At where, like where does it come the most and stuff. And why do you think it comes there the most. And then just how much time we've had a sickle cell in this year like a sickle cell attack like in the whole year and. Where, what the blood cells do when, you know, we have an attack. And they told us that when we have an attack basically the blood cells because they're not round they're circular, like a banana shape they get clogged up and they can't go through the system. So it's like if those were round then they'll just flow through, they'll just flow through. But because they're a banana shape you know they get stuck in each other and it just blotches up and then that's when an attack comes. So it's just in your leg and 'cause there all blood cells are just in one place then it just starts a pain. And they just tell, they just talk about that and stuff like that basically. Yeah.

Yeah it's good to have other people, you know, they're your friends and they've got sickle cell as well. It's like for some reason you just feel closer to them. You feel like yeah we've got the same thing and yeah we're always striving to, you know, just don't have as much sickle cell attacks as we can. Do you understand them. We wish, it's feels like someone is on your side. But we can all do it you understand. It's sometimes they look normal. They look normal so I think if they look normal, I can look normal. You know and we don't have to go through as much pain as we, as we do. So.

Support organisations sometimes run workshops, holiday clubs, camps or summer schools for young people. These were often a great place to meet other young people and gain confidence. However a woman with arthritis told us that she had felt sad for children who were severely affected who could not join the others in running around. She concluded that it would be better to mix groups so that not everyone had the same illness.

Miriam is at university doing a Masters degree in English Literature and works part-time as a librarian. She lives at home with her parents. Ethnic background/nationality' British.

But at the same, that was at the same time that I started volunteering for AYME (Voluntary organisation for young people with M.E ). And they run a, or they ran a yearly conference and I sort of got in touch with this girl who was also volunteering for AYME. And we'd written some letters to each other and some e-mails and things and she said to me, 'Did I want to go to conference?' And I was absolutely terrified. I just thought three days away with total strangers. I just don't know if I want to do this. But I, I thought you know, you've got to, you've got to make an effort. I've got to be brave and it's going to be with people who at least do understand M.E. So I took that plunge and went. I have never been so scared in my life. And I remember getting there and just walking through the door and thinking, 'I can't handle this. I shouldn't have come. I don't want to be here.'

And then two or three people just sort of started talking to me and just being kind of really friendly but not sort of, you know, pushing me too much. And I thought, well ok just stick with it for a little bit longer. And I had a really, really good weekend. And this girl that I'd been writing to it was like we had known each other our whole lives. It was really funny. We just really hit it off and we were just like laughing immediately and having a good time. And I learnt a lot there because there was a lot of people who'd had the same experiences and it was like, it's about the first time that I ever sort of thought, 'Hey it's not just me. I'm not just a freak. There's lots of people that are having this happen to them too'. And it wasn't so much the physical things. It was like the way they'd felt about what was happening and the way they felt like they didn't want to make friends with anyone. You know that was really weird to be in a group of people all laughing and joking saying, 'Yeah I'd felt like I didn't want to make friends with anyone'. Because you're like, yeah why are we all here? And I guess it's like there is always that part of you that, you know, you do it as a safety system. You sort of think, right I'm not going to be friends with anybody because that way no one can know about me. No one can hurt me. And then when you do make that effort you think, 'Ok well I might say I don't want to be friends with anyone but actually I really do because these people are, you know really nice'. And that gave me a massive confidence boost.

And then I did, I did a lot more volunteering with AIM. And they have, they run service teams. They have six service teams that run all of the services for the charity. And so I became a team leader for one of the service teams and I had something like 23 children or young people who were working for my team. And I was in charge of like making sure that they all did their jobs and they were all happy and things. And that was like the first time I got back to having responsibility again because, you know, at school I used to be. I was, I was head girl and I had responsibility and then all that had gone away. And that was the first time I got back to being like, 'Hey I can do this again'. You know, I can achieve things. So that gave me like a massive confidence boost.

view profile

Profile Info

Age at interview:

21

Sex:

Female

Age at diagnosis:

12

Background:

Sara lives at home with her mother. Her education has been greatly interrupted by her condition but she did an advanced GNVQ in Information Technology and has applied to do an Executive Public Relations course. Ethnic background/nationality' White British

I've always felt like that. I've always felt, it's not necessarily sadness and it's sometimes, it, bitterness can creep in but when you watch other people, especially your friends, or, like I say on this workshop, people who are supposed to be like you but they can still do all these things, they can still run around and 'cos we were on this estate where there were lots of things to do, games to play and trees to climb and things but I felt that even though you were around people who did have, have the arthritis they didn't have it to the same level as you and they were sort of, even though they had it they were doing all the things that you couldn't do and it was almost like it was being rubbed in your face. But nobody obviously meant it to be that way.

But it's, I think life can be like that sometimes when you see your friends doing things that you can't do. But it's, I think it's like that for people who don't have arthritis. Some people aren't really good at sport, some people aren't good that these things so yeah that was the only thing that really disappointed me. It was, it was fun though, it was nice to meet other people like myself. I've never really been one for feeling quite alone with it because, because I'm an only child I, and I don't have brothers and sisters, maybe that's it because I should imagine if you do have brothers and sisters it's quite difficult to not be able to join in with them. But because it was just me and my dog [laughs], he was sort of like a brother to me, my dog, when I was very young my dog Fred. Because I had him, I never, I suppose there was never anybody around that was sort of there doing the things that I couldn't do. But it, it was nice to meet other people. I felt that the workshops themselves were a little bit too focused on the arthritis. I know it, it sounds a bit silly but it was, it would have been nice to have talked about other things as well.

Because we, we went to focus groups and we talked about, it was good feedback for the hospitals about whether, what the hospitals were doing right and wrong and did we really know about the disease, but I also felt like they were leaving out the rest of us because the arthritis is only a part of our, ourselves and like they were leaving out the personality part and the bits that we like to do and we went out on, on day trips and things, it was only for a weekend but we did go out on day trips, so I suppose that was the part, the rest of ourselves is how I put it, but sometimes I think even when you're not meaning to people can focus on it a little bit too much. That's why, when I meet somebody for the first time I rarely tell them about it straight away and I only do if I've been talking to them for a long time or if we're going to do something that maybe I'm not going to join in with. Because I do try and put across the rest of me first and leave that bit till last. Not because I'm afraid of what they'll think or anything but I just don't want it to be sort of the main point about me.

We talked to some people who had taken part in workshops for 12-18 year olds run by the Expert Patient programme, who described the activities and possible benefits of the workshops, which are intended for any young person with a 'long-term condition'.

Miriam is at university doing a Masters degree in English Literature and works part-time as a librarian. She lives at home with her parents. Ethnic background/nationality' British.

What do you think is the best and more effective way to give young people information about how, about self-managing?

I think other young people having done the workshops that we've done, it's amazing just. You can, you can have two young people who are in a room and they can be like, I've never met somebody else with the same condition as me. And that can just make all the difference to them. You know you see very shy, very nervous, very frightened people come in. By the end of the day they are laughing and they're relaxed because they feel like it's not just me. And I think like that's what happened to me too was going to that conference made me see it wasn't just me. There were other people around and they still liked me even though I had a condition. And I think, you can't achieve that by, by literature or by telling somebody. You have to let them experience it. And the only, you know, young people want to be accepted by their peers first and foremost. And so making it possible for them to do I think is like one of the most reassuring things that I could think of. And I think also just like giving them a chance to do it in their own time as well. You know not forcing it. I was really lucky in that I was never forced to go and get over it and, you know, go out and get on with it. I was given the time to just get my head around it the way I wanted to get my head around it. And largely it was just me thinking it through myself and not. I didn't always tell anybody how I felt. It was just, I just needed the time to, to bring myself to go and you know, look at the information that was available.

view profile

Profile Info

Age at interview:

22

Sex:

Female

Age at diagnosis:

16

Background:

Elizabeth lives at home with her family - mum, dad and younger sister plus two cats. Ethnic background/nationality' White British. At university she applied for Disabled Student Allowance and says it's the best thing you could do.

The Expert Patients Programme, it works with people with long-term health conditions. So that can be any long-term health conditions. Diabetes, arthritis, blood pressure, people like me with scoliosis, epilepsy, depression, other long-term mental health conditions. So any long-term health condition we work with. And we run like self-care programmes. So it's just really like courses to help you live day in and day out with your condition. And we're not like medical people, we're not doctors, we're not nurses. It's more about lifestyle, how to communicate with people, how to overcome any problems that you may have. So we look at things like relationships with your friends. We look at problems that you may have experienced, like problems with your family, problems with school. But we don't just look at problems. We look at like things that you can do about it. But it's not like being at, at school, or it's not like being in a lecture. It's really quite active. Everybody participates, everybody gives ideas. If you come up with an idea that's not, not, that is quite unusual, nobody says, 'Oh, that's a wrong idea. You shouldn't do that'. Everyone's quite open to hearing new stuff as well. And it's just nice really, because people listen to what you've got to say.

And the people you provide this training there are between the ages of 12 and 18?

12 to 18, yes. And the people who stand at the front, they've all got long-term conditions themselves. So we understand what people are going through, and we've been there. So we know, when we say we understand, we really really do understand, because we have been there. And it's not about talking about your condition all the time. Okay, it's, you may have a condition, but you still have a social life, you've still got your education, you've still got your friends. So it's looking at those aspects of your life rather than looking so much at your condition. And just ways that you can fit those things around your condition.

Also that, I'll say about the, when you're actually on the day as well we do like other activities. So it's not just like your condition. We do like a little bit of acting in there. We do sort of like sessions at the end. So we do, we've had like, like a hip-hop artist and we've had making a music video. We've had like art sessions, we've had like music workshops. So it's not just about your condition. It's about doing other stuff that's not really related to your condition. Because really you're a person, you're not your condition. It's like, 'I'm Elizabeth with scoliosis. I'm not that patient with scoliosis'. It's an awful thing to say. So it's just recognising that, you know, you have got a condition, but you've still got to live your life, otherwise you're going to be boring.